Hugh's Journal

Allen Carkner  Not a doctor but that is my understanding as well. You want to keep your own valve as long as possible. TAVR is not generally done on calcified bicuspid valves especially in younger low surgical risk people. Good news is you get to keep watching and waiting. It took a few years for me to go from moderate to symptomatic severe stenosis from my bicuspid valve. At that point my heart was still not enlarged or just slightly and still maintained a good ejection fraction but it was time for surgery. Hope you find a way to manage your expectations and anxiety around your heart. We’re all a little different and so are our hearts. Take care!

Marie Myers  With a calcified aortic valve, it is my understanding that the risk of knocking off some calcium is higher with a TAVR. I also thought that a TAVR is more difficult to seat tightly on a bicuspid valve because of the irregular shape of the bicuspid valve itself..I had my bicuspid valve replaced with a bovine tissue valve 7+ years ago, and am hoping for TAVR next time around. So far, so good…

Lynne Anderson  I was on the "wait and watch" protocol starting in 2019. My cardiologist planned on TAVR at some point but my echocardiogram in late 2023 suddenly showed my aortic stenosis had progressed quite rapidly in one year. Further tests indicated a bicuspid valve that was too large to be replaced via TAVR. Also, I had begun to develop an aortic aneurysm which my cardiologist and surgeon wanted fixed. I requested minimally invasive OHS, but my surgeon wanted as much room as possible to repair the aorta.  I'm 9 weeks post-op and it really wasn't as bad as I thought it would be. Uncomfortable at times, but I was never in any pain.  Other than a very thin pink line in the middle of my chest, I often forget I even had surgery.

Grace Mason   That was also my recommendation from a few different surgeons. Watch and wait, open heart. I think both are good advice.

Hugh Martin  Thanks for the helpful comments, guys. I would like to avoid open heart surgery if it all possible, not only because the prospect would terrify me, but also due to the long recovery period. it's a tough decision, but I would prefer to limit my exercise regime [although my consultant said I could continue with the couch to 5k programme, do circuits and even trek up to 20 miles with training]. Whatever happens, I am not going to go against my consultant's advice [my wife wouldn't let me!] 

Lynne Anderson  Hugh, probably one of the best things you can do is keep up your exercise regime.  It will make recovery much easier. And yes, the thought of OHS terrified me, but the recovery was much easier than I thought.

Diana Chamblin-Bevirt  Hugh, initially I was evaluated for the TAVR for  mitral valve repair, but the surgeon determined I was not appropriate for that and he determined I needed open heart. I was very disappointed but apparently TAVR surgeries are for patients who have higher risks, other medical conditions, etc. and couldn’t tolerate open heart surgery as well. My surgeon said because I had very low risk for surgery, he could go in and do everything needed, and I would have a much better outcome with great chance of eliminating the regurgitation, compared to TAVR. 

Hugh Martin  Thanks Diana, but I understood TAVR was not now limited to high risk patients. However I am not an expert in this field, so would be interested in other views. Best wishes on 19th btw

Nancy Bukowski  Hi Hugh, from what I understand and the research that I had performed, there is a lot of criteria to be considered pertaining to the various surgeries and which would enable the best possible long term outcome.  In my case with a bicuspid aortic valve, it was determined that TAVR was not the best option.

Valerie Allen  Same for me, Nancy. With a bicuspid valve causing aortic stenosis and aortic aneurysm, I was evaluated and told that a bicuspid aortic valve generally necessitates OHS because for TAVR they push the current valve to the side and the bicuspid valve prevents a good seal. So they do OHS first to set it up for a future TAVR.

Mary Malone  Hi Hugh I was also evaluated for a TAVR, but due to the narrowness of my valve due to calcification I needed an AVR I did this all at the Cleveland Clinic, Ohio. I had a minimally invasive AVR, which was still open heart surgery, w/o the sternotomy, which left me w a 4" horizontal scar between my 2nd and 3rd rib. Don't know if anyone else is doing this minimally invasive approach. Best of luck

Suelynn Hanegraaf  I’ve had AVR twice - most recently in April. I was told I was not eligible for TAVR both times due to my age, size of aortic root, health, etc., by two major heart institutions - Cleveland Clinic and Northwestern Medicine. Now that my aortic root was replaced and enlarged during my 2nd AVR, I will be eligible for TAVR for my 3rd (if I meet other criteria). Every situation is different. 

Diana Chamblin-Bevirt  Yes I think it is mainly up to the surgeon, and each patient has their own individual situations that make them a candidate for one vs. the other.

J Alexander Lassally  You are missing the durability angle here. There are significant differences in durability of procedure and the melding of age and risk long term in some cases.  I don't think people choose open heart surgery, but it can be the best investment in a durable long term outcome. 

Allen Carkner  TAVRs don’t last forever and valve on valve is still in its infancy. My cardiologist described valve in valve as being imperfect because inevitably the opening has to be smaller than the original in order to fit inside the first TAVR. so in essence, you might start with some “stenosis” upon insertion of the second valve. People with a long life expectancy or specific valve morphologies often benefit from more involved durable valve replacement options in spite of the intra and peri operative risks of minimally invasive procedures and even full sternotomy open heart surgery.

Adam Pick  Thanks for the kind words about the website Hugh!  I will pass that along to our team.  Regarding your point, I see the value of TAVR for certain patients.  And, I see the value of OHS for other patients.  While my surgery (a Ross procedure) was done almost 19 years ago, I would still have opted for OHS today.  I was a younger guy (33) and I was hopeful that the Ross Procedure would provide me a life-long fix without anticoagulation. So far, so good. There are so many options these days for all types of patients, it is so very critical that each patient does his/her research to figure out which is the best treatment given their specific disease, their lifestyle and the lifelong management of heart valve disease.

Hugh Martin  Thanks Adam, I have a bicuspid valve [it wasn't discovered until I was in my 40s and didn't stop me running over a 100 marathons]. I would like to know whether this would prevent my having TAVR, as I don't like being in hospital and want to get back to exercise and running asap. I am 75 btw

Hugh Martin  Hi Adam, when you say, 'which is the best treatment given their specific disease, their lifestyle and the lifelong management of heart valve disease', how much of this is down to the patient and how much to the cardiologist. It takes a brave person to go against their advice!

Marie Myers  For me, 2 aneurysms insured that I would have SAVR. I have also read that the irregular shape of some bicuspid valves can make TAVR difficult to seat the new valve without leakage. The other difficulty with TAVR in low-risk “healthy”  patients is the lack of long term data . Since TAVR hasnt been as widely available  to healthy patients, I don’t believe we have tons of data for long term ( over 10 years)  valve function.  All said, I am hoping that my next valve will be a TAVR when my current valve deteriorates. As my cardiologist says, “I will ride the wave of technology” !

Rose Madura  Many reasons actually.  In addition to what Marie said, my aunt had a TAVR as a "healthy" patient (the first in her county) and it lasted 9 years. She had a second one last year but passed away a few months later of cancer so we'll never know how long that would have lasted.  If you are young, not a good option. I was 59 when I hand SAVR and doing great nearly 7 years later. Like Marie, I anticipate a TAVR in the future.  TAVR is not a once and done unless you are older. SAVR is no picnic in the park but very doable.

Jennifer Fuller  Yes. I think there can be a difference of opinion on this. My cardiologist, who recently retired, told me when I was at moderate and on the cusp of severe, that I could probably wait quite a while before surgery. The cardiac surgeon I saw looked at my test results and felt I had been a candidate for surgery for at least a year when I saw him. He said the old thinking was to put off surgery as long as possible, but that too many of the patients who waited didn’t have positive outcomes, so the thinking has changed.

Isabella Heart  If you have slight to moderate stenosis, you may  have years before you will have to do anything! Definitely get a second opinion!!!

Sue Maize  Mine went from moderate to severe within a few months and my surgeon told me I probably should have had the surgery a year ago. Another opinion might help ease your mind.

Sue Maize  Hi Hugh, anxiety is to be expected. Heart surgery is a major life event. When I was first diagnosed with aortic stenosis my cardiologist said it wouldn’t be an issue for another 20 years, so I was able to put it out of my mind. Then when I found out just before Christmas that I would need AVR surgery soon, I was shocked and devastated. It’s all I thought about for the next 3 weeks as I tried to get my will updated and spent almost every waking minute researching my options, I’ve read a lot of similar reactions from this community.  Because my stenosis is now severe I need to be careful how much I exert myself, but I was hiking regularly before this latest announcement…fortunately nothing bad happened out on the trails. And my cardiologist said I could continue to walk and hike and even lift light weights, but to not overdo it. Your valve is mild to moderate so you should be okay, but listen to your doctor because you may not know when or how fast the stenosis will worsen. How often do you get echos now? It’s good that you jog with friends. Keep living your life! 😊

Rita Savelis  "Overdo" is a very vague term. I hear you Hugh. Keep moving. Keep jogging. This is so necessary for anxiety, which can be rampant pre-surgery. You're not even there yet. Do what feels right for your body.  Anxiety is normal pre-surgery and post surgery. Talking about it can help. Complaining is always okay! So sorry that you have to go through this. But keep up with the jogging and with whatever makes you feel better.

Amy Berger  I found out I had mild/moderate aortic stenosis on an echo cardiogram because I'd always had heart murmur and my Dr. wanted a "baseline". We were shocked because I had no symptoms no family history and no other health problems. I had immediate anxiety and Googled everything I could which didn't help at all. I was also considered younger as I was 65 at time of diagnosis. For the next two years I went for echo cardiograms every six months, then every three months as stenosis went into severe. I maintained severe status for about 18 months. Looking back, my life was pretty much consumed by thinking about it and pending surgery. I had open heart surgery a year ago this week to replace my aortic valve and root expansion. The surgery was easier than anticipated and recovery was much quicker and also easier than anticipated. The absence of anxiety and stress is such a relief! Keeping busy and involved with "normal" routines and friends is the best way to cope - I'm just so thankful that there is a cure for this and so thankful to the medical community. Stay close to this website, it was a lifeline for me.

Alexander Casler  I was diagnosed with severe stenosis and severe regurgitation a few years ago. At the time I lived a completely sedentary life due to a back injury that flared up if I did anything physical.

The day after my first echo I started working out 5 days a week, a mixture of moderate weightlifting and HIIT cardio. I've maintained that routine every week since that day.

I had terrible heart related anxiety for a year or two before my diagnosis due to some palpitations and for some time after. However, now I have little to none.

In addition I actually was diagnosed with moderate stenosis and regurgitation when I was 12, but that was kept secret from me. I went through high-school playing soccer and football. I went through my twenties disc golfing and hiking the mountains of western Montana, my heart never limited me. 

I would keep exercising and consider talking to another Cardiologist about it. 

J Alexander Lassally  Yep - Hello Anxiety!  Not being facetious, but frank. It was hard to explain how the specter of heart surgery consumed everything for me in the buildup .... The good news is that at least in recovery you can focus on recovery (or future travels - Everest of not!) 
And yes, less ability to exercise, but one must just accept that. 

Marie Myers  Yes, anxiety definitely increased with the “You need heart surgery” mandate. Physical activity helps me dissipate some anxiety, though I don’t quite do as much as I once did. (Then again, I am 70 now…) I also do some yoga and meditation to help keep anxiety at bay. As my cardiologist says, “you have to live your life” and so I push on. You can do it!

Grace Mason   Absolutely, I think that is the norm. Our hearts are our engines and hearing it isn't working right is scary. My greatest anxiety was immediately after learning about it and hearing about worst case scenarios when I didn't really have a great understanding of my heart problems. Eventually I started living my life again. Truly everyday I wake up and I don't know what the day holds for me, heart problem or other possible life altering event, so I try to remember that even now post surgery.
Hearing it was time to talk to a surgeon triggered the fears again. Fortunately, I was only restricted from running marathons and lifting more than 70lbs, so exercise was(is) one great stress relief. The other things that helped me manage my awakened anxiety the most, were Adam's blog site and members, learning more about my choices, and some days anxiety meds.

Hugh Martin  Thanks for the responses, guys. I can't help comparing my present situation with one 14 years ago when, after becoming breathless when running a couple of miles, I was eventually fitted with a stent [although I had to 'twist my cardiologist's arm' to have an angiogram. I went on to run a marathon 4 months later and over 50 after that without even thinking about my heart!
I think the difference this time is that I've not actually had anything done [apart from a couple unsuccessful ablations for AF] and being prescribed a wide variety of medication, so I felt a bit of a fraud attending a rehab class.
I have echocardiograms every 6 months and don't know whether I wish they would show the need for a new valve or not! In any event, when the time comes, I hope it is by TAVR, as I would be terrified of open heart surgery and the long recovery period, never having spent more than one consecutive night in hospital.
I have to say I am really glad I found this site and sharing experiences in this way




 

Grace Mason   Just an added note Hugh, I am 4 months out from open heart surgery and the experience and recovery was not nearly as difficult as I imagined it would be, if it comes to that for you.

Suelynn Hanegraaf  Often an anxiety disorder is triggered after a life-changing experience. I can recall noticing that my anxiety flareups increased after my heart valve surgery. Meditation (letting go), walking in nature, volunteering and being with family and friends help to keep my anxiety at bay. You are not alone. And by the way, open heart surgery and recovery is not as bad as you think. Better to live!

Hugh Martin  Thanks again, guys. I recently read an article about people suffering from depression after heart surgery, but, as you say, there are solutions to this. It just just means getting off the couch and out there!

Rita Savelis  I had depression after heart surgery (which is as common as anxiety before heart surgery). No need to think too much about that now, Hugh, but awareness of any common late effects is good so that if and when they happen you can feel you are part of the norm and not like this is happening only to you. 

Sue Maize  I was thinking the same thing Rita…I’d love to connect with you personally  somehow, maybe email. Let me know if you’d be open to that, no pressure. 😊

Hugh Martin  I have been told by cardiologists that running marathons in not good for the heart and led my having an enlarged atrium and AF. However they accept it is not the cause my my aortic valve stenosis that apparently occure in time with bicuspid valves however healthy the diet! 

Paul Lebel  Not a clue.  All my workouts are at sea level.  Curious about your reason if it's just to fly in and out. I assume you have high attitude experience?  Even if you don't hike the distance,  any work you do there would be very taxing. Mt Whitney in CA is comparable height but you have to hike it (and it's snowy atm). Are there any high altitude hotels in the Rockies you could hang out in for a week to see how you'd do?

Marie Myers  You are obviously in great shape!  You have also gotten a lot of mileage on that bicuspid valve. Just keep up with your checkups !

Susan Lynn  Wow! You have had an incredibly active life, but if your cardiologist advises against trekking to Everest base camp, you should probably listen. While you have many, many impressive accomplishments behind you, there are only so many years ahead. It is said, 'For everything there is a season and a time for every purpose under heaven.' Wishing you the best!

Deena Z  Hugh, you definitely push yourself to the limits.   It's who you are and you thrive in that space, so I can see why it is hard to limit yourself to moderate exercise.  Your moderate is probably more extreme than for the average 40 year old man:).  I can't speak for the medical side, because it is a medical call as to what you can and can not do at this point re: trekking.  Whatever you do, don't loss that love for adventure!

Hugh Martin  Thanks for the positive feedback, guys. One question that I would like an answer to is that, when the time comes to have the valve replaced, why ii it not always done by TAVR, which is minimally invasive and far quicker to recover from than open heart surgery?

Marie Myers  Some bicuspid valves are not amenable to TAVR due to calcium buildup or irregular shape of the valve. But the good news is once you have open surgery to replace the bicuspid valve, then TAVR can be used the next time.